Actionable Patient Safety Solutions (APSS)

Challenge 2

Healthcare-associated Infections (HAIs)

Healthcare-associated infections (HAIs) are infections patients acquire while being treated in a healthcare facility. HAIs are serious and, often times, preventable if an actionable prevention plan is in place and best practices to safely manage these infections are implemented across the organization. PSMF currently focuses on the following topics related to HAIs: Hand Hygiene, Catheter-associated Urinary Tract Infections (CAUTI), Surgical Site Infections (SSI), Ventilator-associated Pneumonia (VAP), Clostridium Difficile Infection (CDI), and Central Line-associated Blood Stream Infections (CLABSI).

Want to Help Create an APSS?

Each APSS is developed by a workgroup comprised of patient safety experts, healthcare technology professionals, hospital leaders, and patient advocates. The Foundation is proud to connect as many stakeholders as possible to focus on how these challenges can best be addressed. The Foundation’s Board of Directors also contribute and review the APSS prior to their annual dissemination.

Value of Becoming a Partner

We believe that progress cannot be achieved by sitting on the sidelines; we must take ACTION together. Like-minded individuals are the driving force that makes our mission to reach ZERO preventable deaths not just conceivable, but achievable.

Patient Stories

Patient Stories

Candice Sanders

My name is Candice Sanders. I am a 36 years old single mother to my 3-year-old daughter. During my C-section with my daughter, I contracted MRSA (Narcotizing Fascitiis), Cellulitis, and my blood was gram-negative. I had to undergo 7 surgeries and 9 blood transfusions and I was separated from my newborn for a month; while in a California hospital. I had 2 surgeries in Las Vegas and because the infection was spreading so fast, I was air lifted to another hospital, where the team of surgeons saved my life.

Although I survived the horrific experience, I am left with what looks like a botched tummy tuck but what is actually a huge scar going across my stomach that pains me every day. I sought legal counsel only to be told that I could’ve caught MRSA anywhere and there is nothing that I can do about it. At that time, I was on a walker with an healing wound and I did not push for further legal assistance. Everyone told me that it isn’t worth fight the hospital who did this to be because it will be too costly; so I gave up. I just focused on healing and making sure that I was in good condition to care for my newborn. But here I am, 4 years later and it still bothers me that I was not able to share my story or received any type of justice for what had happened to me during my C-section. I am blessed to have survived, but I have to look at myself in the mirror every day and stay reminded that I almost died giving birth to my daughter which was no fault of my own. Going to several Plastic Surgery consultation just to be told that it will cost over $20,000 for me to have my stomach reconstructed.

Patient Stories

Michael Skolnik

The last normal day of Michael’s life began like any other. He was sitting on the couch playing with the family’s new puppy. Suddenly, he inexplicably passed out. When Michael regained consciousness, the 22-year-old EMT and nursing student knew he had to get to the emergency room right away.

At the time, a doctor suggested that Michael had probably had a seizure, a side effect of Wellbutrin, an antidepressant he had been taking for smoking cessation. But a CT scan later revealed a three-millimeter dot in his brain. The Skolnik’s believe that the neurosurgeon made a quick and deadly rush to judgment. He had warned that Michael was lucky to have survived his initial seizure and that he needed surgery immediately.

“He said, it’s a very simple operation,” Patty recalls the doctor saying. “You don’t even go in the brain. All I do is go in and excise the cyst.” The Skolnik’s say the doctor claimed to have performed many such surgeries, but he later admitted in a legal deposition that Michael’s procedure had only been his second.

Whatever the case, no cyst was removed or revealed. An exhausting three-hour operation ended six hours later, and Michael was never the same again. Other physicians have since told the Skolnik’s that at most, a shunt should have been placed in Michael’s brain and that the elusive dot was likely benign. The seizure, some doctors say, was likely a bad reaction to the Wellbutrin.

The neurosurgeon, who would later establish a […now closed…] medical practice at Western Plains Neurosurgery in Scottsbluff, Nebraska, has been unavailable for comment to the press. He reportedly still lives in the Denver area and plans to open a new practice in Glenwood Springs, according to a Western Plains receptionist.

The Skolnik’s become visibly angry when they describe the way the neurosurgeon announced Michael’s prognosis after the ill-fated surgery. “He pulled back his hat and says ‘I’ve had the worst year,’” David recalls angrily. “We were a family that made decisions together. This changed who we are. It was our life forever with Michael. Now, it’s still our life, but without Michael.”

The family’s 32-month nightmare included multiple surgeries, systemic infections, deep vein thrombosis, pulmonary embolism, DIC and sepsis. Michael suffered from paralysis, psychosis, respiratory arrest and an endocrine-system failure that caused him to gain more than 100 pounds. He was partially blinded and unable to speak. He was fed through a tube in his stomach.

On June 4, 2004, Michael looked into his father’s eyes, mouthed “I love you” and died.

It’s April 1, 1986. Seven-year old Michael Skolnik is up to his usual tricks, but this time, he is armed with a convenient little alibi called April Fool’s Day. The mischievous child is slowly creeping up behind his unsuspecting mother… when all of a sudden, crack! A perfect shot, over and easy. A broken egg scrambled on Patty’s face.

“He just thought that was the funniest thing he had ever done,” Patty recalls, as a glow quickly covers the same face. “My first reaction was, ‘What have you done?’ But then, you had to laugh because Michael just made you laugh. He was such a character.” The laughs come as easy as the tears when Patty talks about her only child. “Your life is forever changed and you hope there is something after death so you can believe you will see your child again,” Patty says. She remembers Michael’s realization, at 13, that he did not believe in God.

“What if you die and you find out there is a God, what do you think God will feel?” Patty quizzed her son at the time. “Well, if God is supposed to be all forgiving, he’ll forgive me for not believing in him,” the young teen retorted.

The exchange has resonated with Patty for more than a decade. “I thought that was pretty profound for a 13-year-old,”she says smiling.“Somehow, some way, I feel Michael is right there behind me pushing me along.”

Patient Stories

Donna Helen Crisp

Upon entering a large teaching hospital for surgery one hot summer morning, I expected to go home the next day, to rest and recover before going back to work the following week. Unfortunately, fate had a different plan for me. My surgeons unknowingly damaged my bowel and everything changed. I woke up in agony late that night when my small intestine burst open in two places. Everyone thought I would die, but somehow I survived multiple medical errors. I have no memory of pain, or the events of the next three weeks.

As daybreak arrived, I was still in acute pain, while residents were writing orders for me to eat breakfast and be discharged. While I was slowly dying, no one was coordinating my care or supervising the new doctors that morning. It took about forty hours before anyone realized how sick I was.

After I was finally rushed to emergency surgery, things got worse, when a student nurse anesthetist incorrectly placed a breathing tube down my throat causing me to aspirate. A gallon of barium dye infiltrated my lungs. In addition to the infection I had from my leaking bowel, I developed raging new infections, including sepsis.

After more surgeries and weeks in a coma, I finally regained consciousness. Still psychotic from the drugs, I vowed to write a book after I figured out what had happened. As a child, I was curious about everything, always asking questions. As a patient, nurse, and nursing professor who taught medical ethics, I knew my perspective would be unique. Because the hospital would not tell me anything, it took eight years to discover the truth and write my memoir.

After five surgeries and a month in the hospital, I finally went home with a large hole in my abdomen, hooked up to a draining machine for two more months. I had no idea how to put my life back together. Unable to move, bathe, dress, or prepare food, my initial recovery focused on regaining enough strength to walk and attend to my usual daily activities. Fourteen months later, I had to undergo a major repair surgery to put my abdomen back together.

During the years it took to write my book, I was amazed to learn how unsafe hospitals can be. Even though I had trained, worked, and taught students in hospitals, I had never realized all the dangers patients face. For example, I had no idea how many patients die from healthcare-associated infections (HAIs) each year in hospitals. In 2014, the HAI Prevalence Survey published findings showing there were approximately 722,000 HAIs in acute care hospitals in 2011 in the USA; and these infections caused the deaths of 75,000 patients during their hospitalizations. https://www.cdc.gov/hai/surveillance/index.html

I was shocked to learn that medical errors is not included on the annual list of major death causes compiled by the Centers for Disease Control and Prevention (CDC). Why? Because the CDC creates its annual list based on information from death certificates, which are filled out by physicians (and others), who use the International Classification of Disease (ICD) code for each cause of death – and there are no ICD codes for human and system factors. When hospital patients die from preventable errors and adverse events, their deaths are not linked to the real causes of their demise, such as misdiagnosis; unnecessary tests, treatments, and procedures; medication errors; immobility and preventable falls; infections from central lines, catheters, surgeries, and ventilators; skin breakdown (bed sores); blood clots; uncoordinated care; missed warning signs (vital signs and pain); poor or absent communication; pharmacy and lab mistakes.

In the hospital where I almost died, I suffered from: inadequate care from inexperienced doctors; lack of knowledge and uncoordinated care; deadly infections and unsafe practice; poor critical-thinking skills; poor or scant communication; and staff who saw me as an object instead of a suffering human being.

While heart disease and cancer are the two leading causes of death in this country, between 250,000 and 500,000 patients die every year from medical errors, making medical errors the third leading cause of death in the USA. Unfortunately, it is currently impossible to get a more accurate estimate, since many hospitals (and physicians) do not disclose errors. A problem not acknowledged is a problem that cannot be studied or resolved. Many patients get worse, or die, without knowing what went wrong.

As I struggled to rebuild my life, I yearned to know why I had almost died in a hospital. The more I learned, the stronger my moral courage grew within me. I was incredulous that the hospital had told me nothing, not one word – as though I did not exist, and had never been a patient there for a month. As I learned the pieces to my story, I wrote my book to help others understand how one failed moment in surgery, for example, can cause unquantifiable suffering and enduring hardship, for patients and their loved ones.

People who know my story often ask me what can be done to prevent medical errors. I say there is little one individual can do. Vulnerable patients cannot diagnose themselves, prescribe correct medications, observe their surgeries, coordinate their own care, or disclose errors when things go wrong. However, healthcare systems and insurance companies can evolve to value patient safety more than profit. Hospitals can operate with transparency so that errors can be identified, understood, and minimized. Everyone who uses health care can become their own change agents.

We need to understand more about medical errors and how so many people die from them. We need to ask lots of questions, especially when we (or people we love) enter a hospital. We need to know more about the informed consent we sign before surgery. We need to maintain current advance directives (living will and health care power of attorney). We need to get second opinions. We need to know which medications we are given. We need to have someone with us at all times (if possible) to be our advocate and witness.

Medical errors are ubiquitous. For the medical paradigm to change, those who work in health care – including hospital administrators, risk managers, attorneys, insurance companies, physicians, and nurses – must summon the integrity and courage to put patients first – before ego and money – and stop denying or covering up medical errors. We consumers of health care must become better critical thinkers and more proactive about our bodies. We must stop trusting blindly that everything is as it should be. We must not wait for corporate profiteers to change their goals. We need to become our own consumer advocates and protectors. Now.

As I struggled to rebuild my life, I yearned to know why I had almost died in a hospital. The more I learned, the stronger my moral courage grew within me. I was incredulous that the hospital had told me nothing, not one word – as though I did not exist, and had never been a patient there for a month. As I learned the pieces to my story, I wrote my book to help others understand how one failed moment in surgery, for example, can cause unquantifiable suffering and enduring hardship, for patients and their loved ones: ANATOMY OF MEDICAL ERRORS: THE PATIENT IN ROOM 2, by Donna Helen Crisp, JD, MSN, RN, PMHCNS-BC.

Patient Stories

Vera Eliscu

My mother, Vera Eliscu, was an alert, active, highly intellectual retired classical dancer and business-woman. In January 2009, at the age of 90, she was admitted to the hospital for treatment of a foot ulcer and cellulitis. An MRI showed the bone in her foot was unaffected.

After five days in the hospital Mom was released to a long-term care facility with a two-week antibiotic prescription and instructions to stay off her foot. Within eight days at the long-term care facility she had contracted the intestinal infection Clostridium difficile and developed pneumonia in the bottom of her left lung. She was readmitted to the hospital. While an aide was feeding her the first night in the hospital, she aspirated food into her lungs. She developed double pneumonia and was sent to the ICU, where she was intubated and put on a ventilator. In the ICU she was extubated twice but her course was uneven and after a week it was determined that she needed a tracheotomy, PICC line, and feeding tube. She received a size 7 tracheotomy tube.

After 10 days in ICU, Mom was transferred to a step-down unit and then a long-term acute care facility for vent-weaning and physical therapy. She did very well weaning and was getting out of bed and ready to walk again. We spent hours together in her room reading from her precious art books and discussing the state of the world. We looked forward eagerly to Mom coming home.

Eleven days after Mom entered the long-term acute care facility, a temporary respiratory therapist changed her tracheotomy tube to a size 4, a very small tube that is difficult to suction. The tracheotomy tube slipped out unnoticed the next day as the nurses were turning her, leaving her without oxygen for 5 to15 minutes. Oxygen was not given promptly or correctly and Mom was in and out of a coma. She was visibly in pain and unable to speak or move. I could see the pain and fear in her eyes, but she never spoke again.

Within three weeks of the tracheotomy tube event, Mom had developed a 13-cm Stage 4 bedsore. The long-term acute care facility did not offer a wound vacuum, because they did not have one, and they did no physical therapy to prevent bedsores. Mom became malnourished, was overloaded with fluids, contracted Clostridium difficile, and developed a urinary tract infection. Eventually, she was transferred to a different long-term acute care facility where she received excellent care, but it was too late. Mom passed away in August 2009, six months after her anoxic brain injury and eight months after being admitted to the hospital for a foot ulcer.

Patient Stories

Millie Niss

Millie Niss was a much-published web artist and poet. She was my only child and a wonderful daughter. She was a talented patient advocate due to a lifetime of painful and debilitating illness, diagnosed as Behcet’s Disease in her early 30s.

Behcet’s is a rare, auto-immune, inflammatory disease which causes vasculitis anywhere in the body. It is often characterized by severe joint pain, skin lesions, and vision loss. It is rarely fatal, but involves frequent medical intervention.

I am a retired psychologist with decades of experience in advocacy. Yet our experience and our instinct that Millie’s care in a community hospital ICU was going desperately wrong could not save Millie.

Millie died November 29, 2009. She was 36 years old. She entered the ICU on November 1, 2009 with swine flu and was intubated. But she was not silenced. After she had recovered from the flu, but a week after becoming paralyzed from the chest down, Millie wrote:

I actually asked Dr. W, if I was still at risk of relapse, and she seemed quite confident, but I sensed something was stewing ‒ I think I got a secondary infection whose symptoms didn’t show until the first day upstairs [brief transfer out of ICU]. I became feverish and my throat felt suddenly worse when it had been OK earlier. Now I hope we can treat the infection successfully FIRST before trying to wean [off the ventilator] at all. (Nov 21st)

What did we know and when did we know it?

From admission testing, we knew Millie was free of infection other than swine flu when admitted

Developed MRSA and other infections in her central line, urinary catheter, and lungs

Patient Stories

Tara Hansen

“For 36 hours we celebrated a homecoming…”

It was March 25, 2011, and the day had finally arrived. After years of dreaming about becoming a mother, Tara Hansen had spent the previous nine months preparing with her husband and high-school sweetheart, Ryan Hansen, for the arrival of their first child and the start of their new life together as a family.

No detail was missed in preparation. Nursery items were purchased and put away for safekeeping. Doctor’s visits were scheduled and plans were made for the delivery. And, as a lifelong athlete and model of good health, Tara was vigilant about maintaining her healthy lifestyle during pregnancy—eating well, staying fit, and fully committing herself to those regular, recommended prenatal appointments. She used to joke with her family that she was the first pregnant woman to crave spinach and mushrooms, not ice cream.

Hers was not a “high-risk” pregnancy, and there were no red flags of any potential problems before delivery.

Yet, just six days after giving birth to a healthy, 9 pound 4 ounce baby boy, Brandon Ryan, at a hospital close to the family’s home, Tara passed away as a result of complications due to childbirth.

“Between our two hospital stays, we spent 36 hours at home as Mom, Dad, and baby. Thirty-six hours looking for all the things we had ‘conveniently’ put away. Thirty-six hours to laugh with each other, and to love one another as a family. For 36 hours we celebrated a homecoming that was a lifetime in the making. That’s it,” Ryan recalled.

“Ultimately, Tara’s death was attributed to an infection from a third-degree tear that had gone unnoticed and uncontrolled, neither caught early enough nor treated aggressively enough to make a difference in saving Tara’s life,” he said.

The condition that cost Tara her life had not come entirely without warning. She began to feel unwell in the hospital after delivery, taking the time to speak to her health care providers about her concerns and suspicions that her body did not feel the way it was supposed to. But Tara was considered a healthy postpartum patient and therefore sent home.

“In my experience, the only person who knew something was wrong was Tara, and she was right. To me it appeared that her complaints just kept falling on deaf ears, with everyone assuming that the pain she was describing was to be ‘expected’ because she just had a baby,” Ryan said.

Following this experience, Ryan wanted to be a part of enhancing the way health care providers communicate with patients. Listening to patients’ concerns and not assuming they’re part of the norm may make a difference in helping to prevent maternal morbidity and mortality.

With a firm belief that sharing Tara’s story has the ability to possibly make things better for the next patient, wife, mother, or family member, Ryan launched The Tara Hansen Foundation in 2012 and now shares the message about the importance of maternal health and safety.

Ryan sees the foundation’s mission of education and raising awareness—the first steps toward real change—as a fitting memorial for the devoted elementary school special education teacher who, with her passing, left her husband with “her final lesson plan, her most important lecture.” It is one he fully intends to see passed on, to be a part of the educational initiatives that it is hoped will enhance a safer, more successful birth experience for all.

One of the educational initiatives the foundation hopes to support is the idea of Stop, Look, and Listen!—a reimagined safety campaign to focus on maternal health and safety. Ryan is pleased to be collaborating with the American Congress of Obstetricians and Gynecologists through their Safe Motherhood Initiative.

Patient Stories

Nora Boström

If I had not witnessed it with my own eyes, I would not have believed it. How could anyone have so much bad luck? How could bad luck be so devastating?

Nora’s bad luck began even before she was born. I was young and healthy with no pregnancy risk factors. My doctor ignored me when I complained of pain contractions and heavy bleeding for weeks. He told me it was not as bad I thought and, anyway, nothing could be done. My water broke at 23 weeks as a result of prolonged bleeding and contractions.

Nora was born on December 11, 2009 – four and a half months early. She weighed 1 pound 5 oz. She was immediately taken to the Neonatal Intensive Care Unit where she spent 129 days. We were so delighted when we finally took her home after four-and-a-half months. But two months after she came home, Nora vomited and turned blue. That’s when Nora was diagnosed with pulmonary hypertension (“PH”). PH is a disease characterized by abnormally high blood pressure in the arteries of the lungs that causes the right side of the heart to work harder than normal. Nora used supplemental oxygen and oral medications to treat her PH. She needed to be on oxygen 24/7 and take oral vasodilators to help reduce the pressure in her lungs.

The doctors assured us Nora would outgrow her PH and thrive. We were very dedicated to ensuring that she ate well and stayed healthy. We had a lot of fun with Nora for the next two years – taking her to the playground, the beach, and for rides on our bikes.

But suddenly, her PH worsened. She started fainting – a serious symptom of worsening PH. The only other treatment was a continuous IV infusion of a potent vasodilator called Remodulin. In order to receive it, Nora would need a central line in her chest that would be threaded to just outside her heart. She would be hooked up to a pump 24/7 that would pump Remodulin into her. They warned us there was a risk of life-threatening infection with a central line. They told us it was imperative that we strictly followed protocol in changing her dressing and in mixing her IV medication. We studied under a nurse and practiced many times before we went home. The home nurse was also assigned to follow us at home and guide us so that we could keep Nora safe from infection.

Shortly after getting the central line, Nora developed an allergy to something in the dressing or the cleaning products. The home nurse said that we should change the dressing change protocols so that she wouldn’t have an allergy any more. So we changed protocols and sure enough, her allergy started to go away.

Nora did extremely well on IV Remodulin. She no longer fainted. She was running around the backyard and climbing stairs. She had a great appetite, was sleeping well, and was generally happy. She celebrated her third birthday with a walk around the neighborhood to see all the awesome Christmas lights. We were so happy.

Then, within two months of changing the dressing protocol, Nora developed a central line infection. They removed the line and put a temporary one in her arm. After a few days, the nurses did a dressing change and sent us home. The next day, Nora had a central line infection. Her arm was terribly swollen. When they pulled out the line, her arm was filled with pus. So the doctor switched Nora to subcutaneous Remodulin delivery that did not require a central line.

But after that, Nora continued to faint or nearly faint, and she was not herself. One morning, Nora fainted and we went to the ER. We were there for nearly nine hours. During that time, Nora was not able to eat or drink and did not receive any IV fluids. As we pulled into the ICU after nine hours of waiting, Nora crashed. She was in acute heart failure and was dying. We were told that Nora had become severely dehydrated and that had caused her blood volume to shrink. With her already exhausted heart pushed to the limit, there wasn’t enough blood to pump to the lungs.

Yet, somehow, she survived. Nora spent the next 70 days in that room in the ICU recovering from nearly dying from dehydration.

Over time, it became clear that she should get a central line to deliver a heart failure drug. So we switched Nora back to IV Remodulin at the same time. Within hours after the switch, Nora started to improve. Clearly, the SubQ (subcutaneous administration) did not work.

We had received training on how to properly wash our hands and wear masks before accessing Nora’s central line or changing her dressing. When we were in the hospital, however, we often witnessed nurses not following proper hand washing. For example, a nurse washed her hands and put on gloves. Then she went over to Nora’s bed and used her gloved hands to lower the bed rail on Nora’s bed. Then she reached to open Nora’s line. The bed rail was not sterile, but the nurse did not start her hand washing over again. We saw nurses touch monitors and pumps after washing their hands. We saw nurses open Nora’s line while leaning over Nora’s tiny chest without wearing a mask. Every time we saw nurses break the protocol, we politely asked them to wash their hands again or to put on a mask. But we could not watch the nurses every second. The pressure was unbelievable – we knew it was life or death for Nora – but we couldn’t control everything.

About six weeks after Nora got a central line, Nora developed another central line infection in the Cardiovascular Intensive Care Unit (CVICU). Hospital personnel just told us that “it happens” and “nothing can be done.”

Nora had a hard time walking for any distance and could not dance or play. But she was finally stable enough to go home. The doctors suggested replacing the temporary line in her arm with a tunneled one in her chest before she went home. When Nora came back from having the line placed, the insertion site was purple and swollen. There was blood around it and the insertion itself seemed jagged. Within 32 hours, Nora had a raging infection at the insertion site. The site became extremely swollen and the skin started pulling back from central line. Nora had a hole in her chest and I could see up into her body. Nora had to have intravenous antibiotics and this delayed her discharge home. After that infection, she was even worse.

We were finally able to bring Nora home. We had a little over two months at home together. We took Nora for lots of bike rides. She sat in a little pool on the patio and played with toys. She loved baking and cooking and doing crafts. We read many books and watched lots of DVDs. Then on Halloween, Nora did not feel well enough to go trick-or-treating. She had been looking forward to it for weeks. Within a few days, she almost fainted upon waking. We took her to the hospital. Within 48 hours of arriving at the hospital, Nora got a fever. She quickly started to crash and by that night she was in septic shock. We learned that Nora had contracted croup in the hospital. There was not much we could do but wait and hope and pray.

Nora held on for nearly two weeks. Unfortunately, she was the victim of more preventable errors. A nurse gave her a double dose of a potent diuretic that sent her into acute dehydration and heart failure. Someone else mistakenly discontinued her IV nutrition for three days until I discovered it. Nora was fighting for her life without any nutrition at all.

But one day, Nora’s heart rate started going higher and it would not come down. Nora was uncomfortable and scared. She reached up and to me and said “hold me.” My husband was right there next to me. I held her tight and she said “please help me feel better.” Then I pulled her head down on to my shoulder. She seemed to lose consciousness and she slowly slipped away. We cradled her in our arms and looked at her beautiful face as she took her last breaths. Our beautiful, compassionate, smart, funny daughter who had everything going for her – except luck – was gone.

Patient Stories

Diana Brookins

Diana Christine Brookins was born on a snowy February afternoon at Fitzsimmons Army Medical Center in 1979. She died on July 25, National Patient Safety Day, 2004. For 25 years, she was the life and light of her immediate and extended family and an entire community of people who watched her grow up onstage in critically acclaimed roles at her mother’s theatre company, HART (Hillsboro Artists Regional Theater Company), just outside Portland, Oregon.

When Diana was 25, she found out she was pregnant and made the decision to keep her pregnancy and her baby. She continued to live and work near her parents in Portland and participated in church and theatre activities. On Palm Sunday, 2004, as she stood in front of her pastor to receive an Easter blessing, Diana collapsed from the pain of a single gallstone.

She was rushed into surgery and a complication ensued immediately. The complication was not acknowledged despite frequent attempts to get attending physicians to believe her. Three weeks following Diana’s original gall bladder surgery, the surgeon did an exploratory operation and collapsed in the operating room upon realizing what permanent damage had been done to this young mother-to-be.

An eight-hour surgical repair followed. Diana lived in two hospitals in critical condition from the 14th until the 29th week of her pregnancy, when her baby daughter was delivered. Within 110 days of having a minimally invasive gall bladder operation, Diana had nine surgeries, nine PICC lines, and developed liver, kidney, and heart failure. MRSA-infected PICC lines had destroyed the tricuspid valve in her heart.

Diana died eight days following the birth of her only child, Julia Belle Brookins, who now resides with her maternal grandmother, Kim Sandstrom Hawskey. Kim is a member of Mothers Against Medical Error and speaks on behalf of patients everywhere. Kim also is the author of Damselfly: The Diana Brookins Story, which is the first full-length theatrical production dedicated to all who have been lost to medical negligence and error.

Patient Stories

Mark Hoefen

Mark was 26 years old and living in Florida. He collapsed one day while out with friends and suffered a traumatic brain injury. He was taken to the hospital, where he was fully conscious until he was placed into a drug-induced coma.

On the second day in the hospital, Mark developed pneumonia, probably due to a mishap with his feeding tube. His parents were told that all was well and that it was a matter of time before he would awaken. On the fifth day, Mark’s mother was informed that he was in serious condition. The doctor questioned Mark’s parents about their son’s use of cocaine. Mark was not a cocaine user, and had not been in the past. That being established, the doctor mentioned that the culprit might be the propofol Mark had been given, and said he would recommend dialysis as a treatment for propofol poisoning. Another team of doctors came in, however, and decided Mark wasn’t ready for dialysis. This was a major error, according to later reviewers of Mark’s record. On the final day, a new doctor said he would move Mark to the cardiac unit and give him dialysis. Mark was prepared for dialysis but never received it. After this doctor left, Mark was not moved to the cardiac floor but to the basement, where he was placed in a barren room without even a char. The parents later learned from the medical records that vital medication had been considered and declined.

As Mark’s parents were visiting him in his new room, a nurse told them there was an emergency and asked them to leave the room. The next news they got was their son was dying and that treatment was futile. Mark’s parents were brought back into the room and he died in his mother’s arms.

The medical examiner ruled that Mark’s death was due to excessive bleeding caused by alcohol and drug abuse. Mark had no history of substance abuse; blood work done at the hospital had shown no drugs in his system and the equivalent of one light alcoholic drink. Later, Mark’s parents had his records reviewed by an independent physician who said that their son’s rapid decline was caused by a condition called propofol infusion syndrome. The reviewer also found many other system failures in Mark’s case. Because Florida law forbids lawsuits over the death of adult children, Mark’s parents were not able to get the answers they were seeking about his care. They wrote the hospital and received a written apology acknowledging poor communication, but the hospital refused to meet with them. They were, however, able to get a retraction of the coroner’s erroneous report that their son had died as a result of substance abuse.

Patient Stories

Kerry O’Connell

My second orthopedic surgeon began each day’s medical record with the phrase “Patient Kerry O’Connell is a very personable 48 year-old male with a very complicated arm.” I grew pretty fond of that brief summary of my life. My complications started when I fell off a ladder painting my house and dislocated my left elbow. The dislocation included a fractured radial head and a displaced coronoid process. Years later, I would learn that surgeons call this injury “the terrible triad of the elbow” or in orthopedic slang, just “triad”. The ominous name comes from some very poor rates of successful outcomes.

My first surgery was a medical disaster. The surgeon elected to use an off-label configuration of an external elbow fixator to save 30 minutes on a late Friday afternoon. The configuration placed his drill directly over my radial nerve. He then decided to use small ½ -inch long incisions, which didn’t allow him to see the nerve. The assistant holding the soft tissue guide didn’t keep it tight to the bone; my nerve slid under the guide and wrapped around the spinning drill bit, grinding about four inches of the nerve into mush. One third of the muscles in my left arm became permanently paralyzed. My doctor couldn’t muster the courage to tell me what had happened. We tinkered with electrical stimulation and physical therapy for four months to no avail. Eventually I consulted four other doctors who all told me I needed a nerve graft.

I found a new doctor who transplanted the sural nerve from my left calf into my left arm. Unfortunately long nerve grafts like mine seldom work. Months later we decided to clean the scar tissue out of my elbow to restore supination and pronation. We had a very aggressive post-surgery therapy plan that involved placing my arm in a continuous passive motion machine that would bend my arm back and forth 24 hours a day for a week. The surgery seemed to go well. The range of motion was great. I noticed that a surgical drain tube that came out of my arm just above the elbow was only secured with a piece of gauze. It slid in and out of my bending arm for three days then fell out. This seemingly minor infection which took four debridement surgeries and two months of Vancomycin to kill off. A month after the infection was gone, I rolled back into the OR for last-chance tendon transfer surgery, which thankfully worked pretty well.

Looking back over my two-year ordeal, I am stuck by the profound contrasts I found within the medical profession. I was privileged to meet dozens of competent, kind, and compassionate people who taught me many wonderful lessons in life. Yet I also experienced a handful of the most brutal individuals I have ever known, who caused emotional wounds so deep that they may never fully heal. I told this sad tale to the chief medical officer of a local hospital who replied that he had never met another person who had complicated arm for a reason. It has taken a few years to figure that reason out but I now spend a great deal of my time promoting infection control, helping wounded patients, and promoting compassion and empathy within the healthcare industry. Along the way I have been privileged to meet dozens of fellow wounded patient advocates who are making a profound difference in this world. The bottom line is, perhaps non-fatal medical errors can have the unintended side effect of extreme personal growth.

Patient Stories

Josie King

Josie King was admitted to the hospital after suffering severe burns from climbing into a hot bath. She had healed, and was set to return home two weeks later. Josie died days before she was to be released. She had an undetected central line infection and severe dehydration.

After she left the PICU, Josie’s central line was removed. Every time she saw a drink, she screamed for it. She was sucking feverishly at her washcloth. Josie’s mother asked the nurses about this and was assured it was normal, although it was not something Josie had ever done.

Sorrel King had been with her 18-month-old daughter every minute from the day she entered the hospital. The nurses assured her Josie was doing well, and suggested it was time for Mrs. King to sleep at home.

Arriving back at the hospital at 5 a.m., Josie’s mother knew something was drastically wrong. The medical team was called. They administered Narcan, and Josie’s mom asked if she could give her daughter something to drink. Josie gulped down a litter of juice. Verbal orders were given: no more narcotics. Josie began to seem a little better.

At one o’clock, the nurse entered with a syringe of methadone. Sorrel told her there was an order for no narcotics. The nurse responded that the order had been changed, and gave Josie the injection. Soon after, Josie’s heart stopped. Her mother was ushered out of the room.

The next time Sorrel saw Josie, it was back on the PICU floor. Her child was hooked up to many monitors and looked awful. Eighteen-month-old Josie King died in her mother’s arms two days later. She had a hospital-acquired infection, was severely dehydrated, and had been given inappropriate narcotics.

Patient Stories

DJ Sterner

On September 19, 2010, I suffered the greatest loss of my life. My husband, Donald James (DJ) Sterner died unexpectedly and needlessly due to a food poisoning infection he contracted while an inpatient at a Texas hospital. In short, his intestines were broken down by Clostridium perfringens bacteria and leaked into his bloodstream, causing organ failure and cardiac arrest. Medical staff dismissed his complaints of pain and failed to diagnose and treat his food poisoning infection and resulting septic shock. He died an excruciatingly painful death, which has compounded my grief. The horrific images of the last 24 hours of his life are forever burned into my mind.

Approximately 24 hours before his death, DJ displayed symptoms of food poisoning. He vomited three times in short succession and was complaining of severe stomach cramps near the bottom of his ribcage. He was not able to have a bowel movement and could not get comfortable. He was fidgeting every few seconds in his bed and was sweating profusely. His breathing had become so rapid he appeared to be panting like a dog. Despite being given morphine injections, his pain continued to increase throughout the day.

When DJ’s doctors came to his room during their normal round time, they dismissed his severe pain and difficulty breathing as anxiety and indigestion. Even the nurse told me DJ was just having anxiety. I had to argue with the nurse in the hallway outside his room that I had never seen my husband in this state before.

Both of DJ’s doctors failed to listen for bowel sounds and failed to take his vital signs, which would have alerted them to signs of septic shock. With the exception of an abdominal x-ray, they ordered no tests to try to ascertain the source of his pain. When one of the doctors palpated his abdomen and my husband cried out in pain, the doctor just made a startled face and walked out of the room. We never saw the doctor again.

As his condition deteriorated, DJ threw his hands up into the air and said, “That’s it. I want to be sedated.” He told me that he was scared and didn’t know what to do. These statements were very uncharacteristic of my strong-willed husband. Two resident doctors were then paged to come to his aid. However, with no explanation given to this day, neither of these resident doctors responded to the seven different pages of his nurse.

Every patient deserves proper medical care. I strongly believe that if a Patient Activated Rapid Response Team program had been in place, I would have called it and DJ would have received the medical attention he so desperately needed.

The leading cause of preventable deaths in U.S. hospitals is failure to rescue. This crucial patient safety measure will surely reduce these unnecessary deaths. Since patient-centered care is the goal of our medical care system, what better way to achieve that goal than to put the patient squarely at the helm?

Patient Stories

Nile Moss

Nile Moss took his first breath of air in a California hospital on August 23, 1990. His parents welcomed Nile with hope and great joy.

Fifteen years later, Nile Moss struggled for his last breath of air in a California hospital, the victim of a hospital-acquired infection. A deadly form of bacteria called MRSA had invaded Nile’s bloodstream and led to deadly pneumonia. Nobody knew that at the time.

Nile said good-bye just before midnight on Easter Sunday. He lost consciousness and died the next morning. His parents were stunned and confused. What went wrong? What could have been done to save Nile’s life? Their confusion turned into a quest for answers.

Tragically, the information provided did not quiet the concern for the parents, or lessen their pain. Nile’s death should not have occurred. Like 100,000 other patients who died that year from hospital-acquired infections, Nile’s death could have—and should have—been prevented.

Nile was born with a treatable condition called hydrocephalus. That condition required two brain surgeries and annual MRIs to monitor his condition. Each visit produced a report of good health. At no time did Nile’s parents fear harm would come to him through routine hospital screens. They were never informed about the dangerous bacteria that accumulate on surfaces in our nation’s best hospitals, and are inherent in many medical facilities.

Seventy-two hours before Nile died, he developed symptoms that looked like the flu—a fever, deep cough, dark mucus, headache, shortness of breath, and fatigue. Pediatric doctors tested Nile for strep bacteria. The test came back negative, but no other tests were performed. He went home with antibiotics that were appropriate for strep and ineffective for MRSA. Nile’s fever peaked at 104.5 and his breathing was labored. Nile was taken back to the doctor early Easter morning. An x-ray confirmed pneumonia. Nile was in a medical emergency, but the truth of his condition had not yet been diagnosed. A rapid two-hour test for MRSA existed at the time, but was not the standard practice.

Five hours passed before Nile was admitted to the hospital, as his fever continued to rise, and his breathing worsened. Five additional hours passed before he received his first antibiotics. His heart began to fail. His parents saw urgency in the faces of the doctors. Nile was dying and the doctors knew it. He was pronounced dead at 5:30 the next morning.

The official cause of death was recorded as sepsis, but later identified as MRSA bacteria that Nile had acquired from simply lying down on a contaminated MRI bed. CDC estimates more than two million people per year will contract one of a growing number of deadly infections while visiting the hospital. Many will pay the ultimate cost for the lack of urgency that has allowed this epidemic to go untreated for decades.

Upon learning these statistics, Nile’s Project was launched to help bring awareness to other families. In 2008, California passed SB1058, called Nile’s Law, requiring hospitals to screen, measure, and report hospital infections.

Patient Stories

Alicia Cole

Alicia Cole had been a successful working actress whose only experience with healthcare was playing doctors on TV. All that changed, however, when she learned in 2006 that she needed a “routine” procedure to remove two small uterine fibroids. Originally, she was scheduled to be home in two days, but that never took place. She left the operating room with a fever, nausea, and pain, and her condition declined from there.

Five days later, during the evening dressing check, Alicia’s mother noticed a small black dot near the incision. In just over an hour, the dot morphed into a quarter-sized pustule. Right then and there, the doctor and Alicia’s mother performed a bedside surgical procedure, cutting open her abdomen and draining the toxic fluid. A terrified Alicia would eventually be diagnosed with multiple hospital-acquired infections including necrotizing fasciitis.

Alicia’s near-fatal case of flesh-eating disease turned her entire midsection into something out of a horror movie and her two-day hospital stay turned into: one month in ICU, two months in the hospital, six additional surgeries, near amputation of her leg, a year and two months of twice-a-day home health care for dressing changes, five months of daily hyperbaric oxygen chamber treatments and three years of treatment at a wound care center for an open, draining abdomen. Six years later, she is still in physical therapy and undergoing pelvic floor rehabilitation.

Alicia’s hospital was later cited for violation of five state laws and ten federal laws for patient safety, infection control, and unsanitary conditions in their operating rooms. An ICU nurse later shared that Alicia was his third patient with NF disease and the only one to survive.

With a talk-to-type program from her bed, Alicia began to share her experience via emails, blogs and social media to educate others. In 2008, she and her parents founded the Alliance for Safety Awareness for Patients (ASAP) as an education and awareness organization. Alicia became co-sponsor of California Senate Bill 158, a measure that helps ensure that hospitals maintain a sanitary environment and mandates public reporting of hospital-acquired infection rates, it also established training programs for hospital infection control professionals. The bill was signed into law in September 2008.

Alicia was also appointed to the state HAI Advisory Committee and has worked tirelessly on the Education and Public Reporting Subcommittee. This year, she also became a member of the State of Wyoming HAI Advisory Group and Chair of the Engagement Committee. She has worked with the Consumers Union Safe Patient Project, lobbied on Capitol Hill, presented at the CMS QualityNet Conference, and was among the inaugural class of patient advocates invited to contribute at the IHI National Quality Forum. All this between making her weekly doctor appointments and physical therapy!

Alicia is also currently a graduate certificate candidate in the Healthcare Management & Leadership Program at UCLA and consulted on the development of the school’s new Patient Advocate Program.

Patient Stories

Kate Hallisy

Our daughter Kate lost her life to an incurable cancer. Unfortunately, her journey was made even more challenging by life threatening hospital-acquired infection, misdiagnosis, and significant and permanent loss of lung function from septic shock.

We knew that we were facing a great battle with Kate’s malignancy but we never counted on the ravages of medical error, miscommunication, and medical care that was fragmented and chaotic. We promised Kate that we would finish the book we started together, so that others could learn from our experiences and hopefully avoid many of the adverse events we faced. The book took eight years to complete and it was the beginning of our patient safety efforts.

Patient Stories

Bill Aydt

On an icy February day, a young man suffered a severe brain injury in a motorcycle accident. One of his healthy lungs was gifted to my dad, who was near death from pulmonary fibrosis.

Dad’s nine-hour surgery at “Super Star” medical center, the #1 transplant unit in the world, went so well his doctors predicted he’d be out on the golf course by the 4th of July. A dozen preventable hospital acquired conditions later — seven months after he got his priceless 2nd chance at life — Dad died, never having left the hospital.

We knew that patients should have someone with them during a hospital stay, so my siblings, mother, and I arranged for one of us to always stay by Dad’s bedside for a recovery period estimated at six weeks — tops. We had a vague idea that we might be called upon to speak up as advocates on dad’s behalf, but frankly, we had no idea what that might entail. We simply trusted ourselves to “figure it out” After all, we were all college educated and seemed to navigate life pretty well.

Though I didn’t know the term “patient-centered” at the time, we assumed Super Star, a leading academic medical center, offered such care — that is, care in which the entire system centers on what’s best for patients. This flawed assumption tripped us up over and over again.

One other thing we didn’t know at the time: with Dad’s discharge on the horizon, his fate was sealed with a fall. He was confined to horizontal traction until a neurologist could evaluate him “in an hour or two.” Instead, a full 57 hours passed before the neurologist came to administer a 5-minute test that confirmed Dad hadn’t suffered anything more than a bad bruise. The next morning, Dad was rushed to the intensive care unit with a raging fever and pneumonia, the inevitable result of prolonged traction.

A few weeks later, a blood clot was discovered in Dad’s arm on a Friday afternoon. His doctors decided to “wait and see what happens over the weekend.” So terrified that the clot would travel, Dad barely budged a muscle over the weekend, but even so, the clot landed in his new lung, compromising its function. I asked for a group meeting with his doctors and pleaded: “Please, tell us how can we get in front of anything else that could hinder Dad’s recovery? How can we help?” Arms crossed, their response was that there was nothing we could do.

Then came the infections: MRSA, a deadly staph infection. Then, C. difficile, yet another potentially fatal infection. Both were treated, then re-occurred — relentlessly. On the 4th of July, Dad was nowhere near a golf course.

In September, he was diagnosed with yet another infection, this one untreatable. Mom and Dad held hands for the final time in those final hours.

Despite everything, my mother wanted to thank Dad’s transplant surgeon for giving him a second chance at life and say goodbye. His staff alerted him, and Mom waited three hours, bedside with the body of her husband of 51 years, just to end their last journey together on a gracious note.

The surgeon never came and never called. Finally, she left for home. Dad’s casket was carried in the belly of her plane back to Florida.

Relevant Statistics

There has been a 50% decrease in CLABSIs between 2008 and 2014.1

1.

Centers for Disease Control and Prevention. (2014). National and state healthcare associated infections progress report. Atlanta, GA: Centers for Disease Control and Prevention.

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